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Where AIDS Takes Away Your Name

Charles Leonard

When the story of how AIDS affects ordinary people in South Africa is told, their real names are seldom used - because it can get you killed.

The smell stung my throat as I entered the dreary hospital ward where my camera-person colleague and friend, John (not his real name), lay in bed. It was said he suffered from malaria. A few weeks earlier, he telephoned me to say that he was okay and he would be back at work soon. But then I got the message that he urgently needed me to come to one of Johannesburg's large state hospitals. When I walked into his room, the smell was a mix of the usual hospital aromas; medication, cleaning agents, hospital food, humanity. But there was something else, too. A smell I didn't know - it was sharp, and made my mouth and throat dry.

John slowly turned towards me. His brown skin had a greyness to it. His normally lively brown eyes looked scared. "Howzit John?" I asked over dry lips, and stuck out my hand to greet him. He wearily shook his head. As he opened his mouth to respond, I saw his was tongue so swollen that he could not talk. He pointed at a glass of water with a teaspoon. I gently poured some water with the teaspoon over his tongue, down his throat.

This was a man who, a couple of years before, had bravely crawled through the central African forest after he was wounded in an ambush by militia. During that ambush, his producer was killed. A slight limp was the only reminder of that traumatic incident, which he never discussed. His camera-work remained of the highest standard, and his dry sense of humour was a constant source of hilarity in our multicultural, closeknit newsroom.

But this day, he held my eyes with his as I said goodbye, awkwardly adding: "Come back soon, my bro', the guys in the newsroom miss you . . . " He slowly let go of my hand. Negotiating traffic as I rushed back to our evening news deadline I began mulling over my visit with John. It was clear to me that what ailed him wasn't malaria . . . That was the last time I'd see my friend. What I detected in his hospital room was the smell of encroaching death.

Before the funeral, a small delegation of the most senior staff in our newsroom went to see his wife at her comfortable, middle-class apartment to convey our sympathy, but also to talk with her about the cause of John's death. A sophisticated, well-spoken woman, she was firm in her stance about what would be said about what killed John: there would be no mention of that in public. I felt somewhat compromised, because I wanted to respect her wishes yet be truthful to the public. I knew that it couldn't be easy to bury her partner and the father of their lovely young son under any circumstances. But in this case, the circumstances were such that we had to be especially careful.

My colleagues and I debated about the language we would use to describe what happened to him, but on our newscast that evening we settled for the compromise that John had died "after a short illness". "A short illness" is the South African euphemism that everyone knew, back then in 2000, that John had died from AIDS. But the circumstances were such that South African AIDS sufferers and their families were further burdened by stigma, partly stemming from a government policy and seriously hampered by denialist tendencies practiced from the average person all the way up to the President's Office.

During that time senior people in government, including President Thabo Mbeki, were questioning whether HIV caused AIDS. There was a reluctance to discuss AIDS openly, and no programme existed to combat its spread. The South African government was not convinced then that anti-retroviral drugs (ARVs) were a cost-effective way of treating HIV, even though ARVs have been shown to lengthen the lives of people who have contracted AIDS ("South Africa's Broken HIV Promises", by Nick Miles, BBC News, 26 April 05).

So it was in this context that the family refused to acknowledge that their beloved John had died of AIDS. By not speaking of John's cause of death I felt like I was playing along with this conspiracy of silence, this questioning of the link between HIV and AIDS. With all due respect, these circumstances probably make it unfair for me to criticise his wife's wishes. I was asked to speak at John's funeral, and I was honoured to do so. I spoke of how John invited me to have lunch with the mostly black staff at the communal area in the newsroom when I had just joined the station as their new editor. I talked about how he didn't want me to feel excluded . . .

In our choice of wording for John's obituary, we weren't lying . . . we were just not telling the full truth about a disease which has currently infected 25 million Africans, five million of them in my home, South Africa. Sadly, that euphemism, "a short illness", is still applied to AIDS deaths in Africa. We have the highest prevalence of AIDS anywhere in the world here, with over one in every 10 people infected. The UN has estimated that the African continent could see 89-million new cases of the killer disease in the next two decades, or up to 10 percent of Africa's population ("HIV 'set to infect 90m Africans'", BBC News, 4 March 05. )

* * *

Lawley is an informal settlement on the margin of South Africa's wealthiest city, Johannesburg - literally speaking, that is. But like so many other similar shanty-towns mushrooming around the country, Lawley is also on the margins in a figurative way, as this is where society's poorest erect their makeshift matchbox houses. They come to urban South Africa desperate for work in a shrinking job market.

My partner, Debbie Yazbek, who works as photographer for The Star newspaper here in Johannesburg, had one of the most difficult briefs of her career take place in Lawley. Her assignment was: "Over the next few months, record the lives of two women who are dying of AIDS. Photograph the spirit, humour, suffering and courage of these two women so that they can become real people to our readers ("Watching the sparrows fall took courage", by Dave Hazelhurst, The Star, 11 October, 2004). But as with my friend John, because of the AIDS stigma and for the sake of their remaining families, these two women whom my partner recorded would be stripped of a basic respect; namely their names.

Over four months, Debbie made about 40 trips to the homes of these two frail women, Peggy and Julia (again, not their real names), recording their heart-breaking but dignified journey from their respective tiny shacks to finally, Sparrows, an AIDS shelter, where they both eventually died. Only when they were admitted to Sparrows did these women find out that they had AIDS. On her death-bed Peggy asked Debbie, yet again, to not identify her by her real name . . . . she was worried that her young son would be ostracised at his school because his mother would die of AIDS.

One day, as Debbie sat at her bedside, Peggy insisted that she, and not the nurse, feed her her tea. She said goodbye, closed her eyes, and Debbie took a last picture as a single tear rolled from her eye. The next day she was dead. Julia followed within days. Debbie was at the gravesides to say goodbye to both women. With writer Nalisha Kalideen, she gave a factual yet sensitive account of Julia and Peggy's final months in three-part series in The Star entitled "A Fall of Sparrows". (See the article here. Part 1, Part 2, Part 3)

In a recent article ("Women bearing the brunt of HIV", Graca Machel and Kathleen Cravero, BBC News, 2/12/04), Graca Machel, who is married to Nelson Mandela, and Deputy Executive Director of UNAIDS, Cravero wrote that over the past two years, the number of women infected with the virus has increased in every region of the globe, and if the current trends continue, women and girls will soon outnumber boys and men infected with HIV. Already, 60 percent of adults living with HIV in southern Africa are women, they wrote.

In explaining the reason why AIDS effects women and girls at a higher ratio, they could just as well have been describing Julia and Peggy's specific situations: "Women are physically more susceptible when exposed to the virus, and too often they don't have the social and economic power to avoid exposure. Too many women don't have control over their own lives � to go to school, earn a living, inherit property or have access to healthcare. Furthermore, violence against women, their abuse, and exploitation continues unabated throughout the world � all of which enhance their chances of infection." What they didn't add is how once these women are infected, the stigma comes to haunt as well. Even on the rare occasion when their stories are told, the stigma makes it impossible to dignify these people with their real names.

* * *

Edwin Cameron is one of South Africa's new heroes and you can take Nelson Mandela's word for that. Cameron is one the country's most respected judges, and he has just published a truly compelling book, part frank autobiography, part incisive analysis, called Witness To AIDS (Tafelberg Publishers, 2005). Cameron is the only public representative to have openly declaring that he is living with AIDS. "AIDS and the stigma attached to it remain one of the greatest challenges for all of us wherever we live," Nelson Mandela wrote in the book's foreword, "and it's voices like Edwin's that will remind us, and keep reminding us, that no one should sleep easily until the disease is defeated."

When Cameron was diagnosed with AIDS in 1997, pharmaceutical companies charged excessive prices for ARV drugs. They also jealously protected their intellectual property rights, making it difficult for poor countries to use their acquired knowledge to produce and distribute the drugs. "Their commercial interests � and they claimed, their ability to carry out further expensive life-saving research �depended on the huge profits that patent exclusivity brought them," Cameron writes in his book, "And Western governments, especially the United States, supported them."

In wealthy countries, public health services could buy these expensive drugs for their patients. But in Africa these exorbitant prices were, as Cameron put it "a death-delivering obstacle". "In this setting my own position was one of exceptional privilege," he acknowledges about his 1997 pre-tax earnings of R6.14 (roughly $4,000 US) per month. "This put me in an income bracket beyond the dreams of most of Africa's 700 million people - and also of most of the continent's 30 million people living with AIDS and HIV."

The drugs were working for Cameron, but he still could not go public about his status because of the stigma attached. "For stigma - a social that marks disgrace, humiliation and rejection - remians the most ineluctable, indefinable, intractable problem in the epidemic. Stigma is perhaps the greatest dread of those who live with AIDS and HIV - greater to many even that the fear of a disfiguring, agonising and protracted death . . . What is perhaps most poignant and most inpenetrable about stigma is that some of its impact seems to originate from within. The external manifestations find an ally within the minds of many people with HIV or AIDS."

Around Christmas time 1998, a 36-year-old South African woman, Gugu Dhlamini (her real name), was stoned and stabbed to death in one of the townships of the coastal city of Durban. Shortly before her death Dhlamini told Zulu-language radio listeners that she was living with HIV. Three weeks later members of her own neighbourhood surrounded her house and accused her of shaming her community by announcing her HIV status. Dhlamini's death prompted Cameron to go public "She died in hospital - her body broken not by the HIV she faced with such conspicious courage, but by the injuries her neighbours inflicted on her." Her killers still walk free, because the prosecution had to drop charges for lack of evidence. But Gugu Dhlamini's name has been added to those who fell in South Africa's new struggle - the one against AIDS and stigma.

* * *

In August 2003, the South African government finally changed its position on antiretroviral (ARV) drugs, agreeing to provide the drugs in a massive rollout to all who were HIV positive. Many of us celebrated. At last, the denialist madness perpetuated by the ambivalence President Mbeki and his controversial Health Minister, Dr. Manto Tshabalala-Msimang, was finally behind us. We hoped that the sad deaths of people like John, Peggy and Julia were not going to be repeated, in that lives could be lengthened, that the stigma was finally going to come to an end, and that AIDS sufferers would get their dignity and names back.

But that was not to be. Since last year AIDS activists have been warning that government was falling way behind their own targets set early last year of putting 53,000 new people on treatment annually, and its dabbling with other "cures", as being "a dangerous and damaging policy". In spite of her government's official treatment policy making ARVs a priority, Tshabalala-Msimang has continued to insist that good nutrition, especially garlic and beetroot, are vital as a treatment for HIV. Earlier this month (May) she started attacking ARVs saying they are taking lives, instead of helping people infected with HIV/AIDS ("Manto's AIDS comments spark outrage", by Edwin Naidu, Sunday Independent, 8 May 2005)

Academics, doctors, and AIDS activists brand her utterances as careless and dangerous, claiming they contradice scientific evidence of the drug's efficacy. In turn, Tshabalala-Msimang questioned the success of her own government's programme, doubting her department's official figure of 42,000 beneficiaries currently on ARVs, saying many people were dying. At a media briefing, the minister, who is often portayed by local cartoonists as the mad queen of hearts in Alice in Wonderland, said that those who suffer from AIDS should eat "Raw garlic and a skin of the lemon - not only do they give you a beautiful face and skin but they also protect you from disease."

Tshabala-Msimang also suggests micronutrients and vitamins as an effective alternative to ARVs. "We'd prefer people to use a number of different strategies to fight the virus," Sibani Mgnadi, the ministerial spokesperson told the BBC ("South Africa's Broken HIV Promises", by Nick Miles, BBC News, 26 April 05). "It's not government policy to stress the supremacy of one treatment over another in combating the virus."

Tshabalala-Msimang is openly supporting the activities here in South Africa by the foundation of European ARV critic, Dr Matthias Rath, who is a discredited vitamin seller. Rath first claimed his product, Vitacor, wass a cure for heart disease, then cancer, and now AIDS. His claims have been refuted by numerous international bodies and experts. The respected health-e website says that he is being investigated in Germany in connection with the death of a nine-year-old boy. The boy apparently died after being take off cancer treatment and put onto Rath's vitamins ("The curious tale of the Minister and the vitamin seller", Kerry Cullinan on the health-e website, 25 April 2005). Rath's foundation has formed an alliance with various AIDS denialists and now claims there is no need for people to take "high-priced and toxic" antiretroviral drugs if they take his products.

The BBC says there no reliable figures for the number of people � mainly in the poor townships � who have stopped taking ARVs as a result of the Rath foundation's well-funded campaigns. But the foundation is sowing major doubts in people's minds and that it is a worrying trend for many health workers who have worked to get ARVs to the people of South Africa (South Africa's Broken HIV Promises", by Nick Miles, BBC News, 26 April 05).

We had hoped with the change in ARV policy that it was going to happen here too: that the sad deaths of people like John, Peggy and Julia were not going to be repeated, in that AIDS sufferers's wellbeing could be improved, that the stigma was finally going to come to an end, and that they would get their dignity � and names � back. But my government's obfuscation, ambivalence, and chagrin over AIDS treatment, its lack of widespread education and demystification, and its ongoing flirtation with AIDS denialists, continue to contribute to the stigma of AIDS. Perhap's "stigma" is the disease's real name.

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